new to this forum

[cbmc]

I was recently diagnosed with Epilepsy - June 2008. I am a 44 year female old so this isn't what I was expecting - no one ever is I guess. To make a long story short in Jan. 2005 I started to experience left eye ticing and facial spasms - first diagnosed with Bells Palsy but that was ruled out - then told it was hemi-facial spasms. Had an MRI and they discovered a brain aneurysm - but it was not related to my facial issues. Luckily the aneurysm was coiled and stented (no rupture, no brain trauma). The eye/face issue continued sporadically but no big deal other than annoyance - and no recommended treatment for the hemi-facial spasms.

In March/ April I experienced what, in hindsight, I know were partial-complex seizures - blank staring, non-responsive - freaked out a friend - but just thought I was stressed and distracted at the time. Was also experiencing strange stomach sensations, waves of anxiety that I also related to stress.

The end of May I had a complex seizure - no aura, no warning - talking gibberish, walking in circles, loss of consciousness, tongue biting etc... no recollection of events - my husband and teenage children witnessed this - thought my aneurysm was rupturing but fortunately that was not the case. Had CT scan, CT angiogram - no bleed. Had EEG - definitely epilepsy neuro says - temporal lobe, both sides. Not related to aneurysm; the eye tics/facial spasms are in fact partial seizures. Went on dilantin - 300 mg. moved to 400 and now up to 500 mg. per day.

The last week and bit has been bad; eye tics and drooping; tired; some nausea. This weekend (after increasing dilantin) I had three episodes which were new - head rolling, eyes rolling and crossing, changes in breathing - not responsive but knew what was happening, knew my husband was there but couldn't have talked to him - had an aura but can't remember or describe it. Lasted from just over a minute to about 30 secs. I don't know what type of seizures these were or how to describe them to the doctor - are they partial or partial-complex?? Do I report them? Sometimes this stuff makes you feel like you are going crazy.

Does anyone else experience the eye tic/drooping. (Apparently the eye droops after the seizures because the muscles are tired from the seizing activity) If this is happening daily (sometimes almost all day or off and on) does that mean I am having partial seizures for that length of time? Would appreciate any information people may have - especially if anyone has similar partials.

 

[haird18]

It sounds like similiar to a stroke to!

Well welcome aboard to a great group and forum and helpful and understanding people . Make yourself at home and enjoy yourself and make many friends and hopefullly we can all be helpful too!:hello:
David

 

[salright2baredneck]

First of all...welcome to the forum. As you will come to find out, this is a great place to talk to others with seizures and find information that is extremely hard to find anywhere else. Everyone here are very welcoming people, and willing to help answer any questions that you might have.

When I had my first tc in January everyone at first thought I had a stroke because of the drooping of my left eye. While my auras are quite different than yours, my left eyelid still droops afterward. The nausea and tiredness are a given, and the severity depends on the severity of the aura. Sometimes it only slows me down a little, and then sometimes it knocks me down to where I have to lie down and sleep for a few hours.

Dilantin seems to be the medication of choice to start people out on when they first present with seizures. Some people's system adapt to it very easily, and some people like myself have a hard time with it. While I was on Dilantin I felt like the walking dead. It was very difficult to function normally and I was very tired all of the time even after being on it for weeks. I walked around in a mental fog and could barely have even told you my name. Since then I have been moved to Carbatrol and while still having some nasty side effects from it and still don't have my seizures 100% under control, I consider it to be a much better medication for me than Dilantin was.

Please don't dismiss any symptoms that you may be having. Even if they seem trivial to you let your doctor know about them. As some of the other forum members will suggest, start a journal. Write everything down and take it with you when you see your neuro. Keeping track of everything from what you eat to how much sleep you get may help you to find some of your triggers and help control your seizures in the long run.

 

[Meetz1064]

Hi, cmbc

and welcome to CWE!!! Well, salright beat me to it! PLEASE start a journal!!! It will definitely help your doctors to try to figure out what's going on. What your triggers may be, if the Dilantin's working or not...what tpe of seizures it is you're having........

In the journal, write down EVERYTHING. OK, it's a pain in the ARSE. But, it's worth it. Write down what you eat & when. What time you take your meds, and the dosages. Computer & TV time, etc, even video games... You get the idea, I think. But it WILL eventually help. I promise.

It's nice to meet you. Mr B (Bernard) has built us an AWESOME home here at CWE...so check out all the nooks and crannies. The Padded Room is great for venting when you need to, and the Library is great for research. Feel free to explore......Kick up your heels, and listen to the music in Speber's Auditorium...

Take care,

Meetz
:rock:

 

[RobinN]

Welcome cbmc - so glad you joined us.
I hope that you will look at some of the alternatives.

My daughter is no longer on meds, and we are figuring out why she is having seizures, rather than covering up the cause with duct tape (drugs).

 

[brain]

:hello: CBMC

Welcome to CWE, while we are not Medical Doctors
here, I strongly recommend that you consult with
your Neurologist or Epileptologist, whichever Doctor
is treating you for your seizure(s).

In addition, since you mentioned you are on Dilantin
(generic - Phenytoin); do you have your blood levels
checked regularly? This is important too as well. But
nonetheless, you should consult with your Doctor's
Office and schedule an appointment as soon as possible
if you are experiencing all of these that you are posting
since the increase of the Dilantin if you hadn't had such
experiences before or an increase of these.

I strongly recommend this.

When I was on Dilantin / Phenytoin - I had my blood
level checked regularly while being on the medication.

As with any AED, they all come with side effect(s),
and your best bet would be to visit:
EPILEPSY 101

 

[cbmc]

thanks for the welcomes

Thanks for the info. I have been trying to journal - but only symptoms or episodes and even that is hard to do religiously. I will try to be better. Have had my blood checked - fall below therapeutic levels which is why the neuro. recently uped the meds to 500. She says I metabolize the dilantin quickly (too bad I don't do the same with food).
I try to watch diet and exercise - I will be more vigilant and see if there is a change. So far I have been unable to identify any kind of pattern with my eye tics/drooping and this has been going on for nearly 3 years. When I have spasms with my eye it sometimes involves my cheek and top of my lip. I also have some tingling and numbness around my mouth and cheek. I am having a hard time figuring out what is related and what isn't . I will definitely let the doctor know about the incidents on the weekend - guess my license will be gone for another 6 months - not that I would feel comfortable driving at this point but would like things to get back to normal.

 

[Bernard]

Hi cbmc, welcome to the forum. :hello:

She says I metabolize the dilantin quickly (too bad I don't do the same with food).

Dilantin binds to protein in the blood syrum. If you don't eat enough protein, the Dilatin will pass right through your system.

My wife is also taking Dilantin right now. She is also eating a pseudo-LGIT diet (she doesn't limit total carbs - just total simple carbs).

 

[Elaine H]

Hi There

I just read about your plight and thought I'd drop you a line, I'm a 45 year old woman, and I think that's what made me feel that I could relate to your experiences.

I was diagnosed in 1986 with Right Temporal Lobe Epilepsy, caused by my being a forceps delivery, and causing scar tissue there, although I was 23 when it all came out. I've had two lots of brain surgery, one in 2000, where they removed a Cavernoma from my right temporal lobe, and again in June this year, where I had a right temp lobe resection and had my Hippocampus removed. I'm sorry to say it hasn't worked, I had a very bad seizure yesterday, although like you, 99% of the time I just have either Simple or Complex Partial Seizures. Since this second operation, my auras have become terrifying, I don't even like being alone in the house now, and rarely go anywhere alone after collapsing outside the village shop back in April.

I was interested in your having a tic in your eye, after 4 years of studying epilepsy with Leeds University, I don't think I've come across this before, I know my right eye is still swollen following the surgery, but I've not heard of eye tics accompanying epilepsy, you can guarrantee that someone on this fantastic website will have though, so I hope you get some answers. My symptoms are the same as some of yours though, staring, non responsive, some fiddling with clothes/sleeves, talking rubbish (as usual some may say) I, like you have head and eyes rolling, non-responsive, I sometimes am aware of what's going on around me, then others, I have no idea until I'm aware of someone going "Elaine, hello Elaine, are you ok?" God, I've been there so many times! I think the tongue biting is particulary awful isn't it? You asked should you report these, I would say yes, keep a diary of the seizures too, that is always helpful to my doctors, I know what you mean about feeling as though you are going crazy!

You have found a great website here, I have had so much support from the guys on here and I'm sure you will too, it is so wonderful to know that we all understand each other, we have experienced people's stupidity and ignorance about the condition, we've all been through it. Keep in touch won't you, I would love to hear back from you, I'm alone tonight (Tues) and tomorrow night, my partner is a firefighter, and I so dread his two night shifts a week, I leave the computer on, and it's like having friends round!

All the best to you, and please keep in touch?

Best Wishes

Elaine x

 

[seizures4ever]

Hi and Welcome!

Glad you found us. I LOVE this site. People are helpful, nonjudgemental, funny, and best of all---there is not a lot of bickering---unlike many websites.

So join us! So sorry about your seizures and health problems, my thoughts are with you. :e:

-Julie

 

[josieb]

CBMC,

I also wanted to welcome you to group. I'm 41 and have been dealing with seizures and epilepsy since my early teens. About 2 years prior to having surgery on the left side of my brain (in February 2006), I started having problems with my eyes twitching. For me, it was initially always an indication that I was going to have a seizure soon. I would get the twitches or tics in my right eye for a period, but when they would start in my left eye, then I knew my cluster of seizures was coming. It never failed. I was on Dilantin during this time.

After my surgery, I again starting the having the eye twitches again after a period of about 7 months. I was still on the Dilantin. Then even after switching my meds and trying new ones, I continued to deal with the eye twitches. It has now just been a year since my last seizure and my most recent med change was in February of this year. Just as they came, out of the blue, about a month ago, the tics/twitching stopped.

When I questioned my neuro about it during my last appointment at the beginning of August (when I was still having them but not as much), he related that the continued tics even after my seizures have been under control could be caused by anxiety.

I sincerely wish you the best of luck with everything and hope you find this site to be as wonderful as I have.
Sincerely,
JosieB

 

[Elaine H]

Hi Josieb

Wow!! Another old fart on this website like me?! Hope your sense of humour is good? I'm only joking mate! Life just gets better as I get older, apart from the epilepsy, I have the perfect man, a beautiful house, some great mates and lovely family, and all I really need is the ideal job and a few bob in the bank! I'm gonna worry now that I've upset you! I bet I haven't , most of the yanks I've known are pretty tough cookies, have a great sense of humour, and are great company! My dad is currently seeing a lady from Canada, she is totally wicked, laughs at life, like me, loves to sing, and as she is currently recovereing from cancer, I have total admiration for her!

Isn't CWE just the most wonderful website? I so hope you have got from it what I have in the last few months, and after my recent brain surgery, everyone has been totally fantastic and supportive. I hope you have a sense of humour? I would be very surprised if you hadn't, I'm 45!!! So bloody what!! I love life, and it does just get better, apart from the obvious. Write soon my friend, and keep yer pecker up!!!!

Lotsalove

Elaine x (Child of the 60's)

 

[skillefer]

Welcome CBMC! As you can see, we're a friendly group. As salright and Meetz suggested, keep a journal. Not just of your odd feelings, auras, or seizures, but also of how much sleep you got, what you eat and drink and when, any stress you're under, etc. After a while, you may be able to figure out what is triggering your seizure activity. For many of us, it's lack of sleep and too much stress. Also, if you drink coffee or energy drinks, you may want to slowly cut back. Hope this helps.

 

[walksalot]

Welcome CMBC. I'm new recently, too, and It's a great comfortable place to be. I've got a lot of support and great advice here and even though my family gives me support, it's so helpful to get it from friends that are walking in your shoes.

 

[dfwtexas]

I am 48 year old female that got diagnosed in May 2008. I have both simple and complex partials. I am on Keppra and it seems to be doing the job, but they are still trying to get the levels correct. My last seizure was 5 weeks ago. This forum is definitely a godsend...lots of very nice compassionate people that only offer positive feedback. I am still learning about seizures but most of my knowledge has come from the nice people here.
welcome!

 

[walksalot]

Hi JGB
You said your last seizure was 5 weeks ago. That's so great. Mine were so close and now I've gone 49 days without one, I feel let out of jail. I had had absence, simple partial, and complex partial seizures for over 30 years, but when I started having grand mal seizures this summer, all the other ones stopped. Now, since August 16th, even the grand mal seizures have stopped.
I've called my neurologist's office at OSU, but I had to leave a message (naturally) and since it's the weekend, I don't expect a callback till sometime next week.

I pray you continue to go for a long time without another seizure.

 

[dfwtexas]

walks, that great news. Before I knew what was going on, I would have up to 6-7 a day...but I could go weeks in between days that the seizure would happen. I did go two months when I started the keppra without any seizures, but then I had two in July and then another one in August. So every day I don' have one is great...but then I wonder how much is the keppra stopping and how much is related to the fact that I wasn't having them daily anyway. I do feel on edge and haven't gotten to the point that I feel keppra has total control over the seizures. At this point, I just thank the Lord for each day that is seizure feel!

 

[walksalot]

jgb,I wondered, too about if the change in medicine might have had an effect. My doctor (actually CNP) had tried to change me from Lamictal to Valproic acid to save me $$$ because the Lamictal was over $1500 a RX (90 days). I also take Topamax that cost me about $800 for 3 months. Everybody on seizure meds is in the same boat. Anyway, the change was what me have a grand mal seizure. But when she put me back on Lamictal immediately, I haven't had a seizure since. Of course, the $1500, drained my pocketbook, but since then, I found out that I qualified for help through Astra Zeneca (wish I'd known about this two years ago -I'm on Medicare Part B-). Now I go to bed thanking God I made it through one more day without a seizure and wake up thanking God I went through another night. I can hardly believe I had another day seizure free and wonder what I did right to get a reprieve . I might call it a seizure sabbatical.

Isn't it great to be at a web site where somebody has actually experienced the same thing you have and knows exactly what you are going through?